One or two of my drugs are on the most recent FDA drug shortage list linked in this article. While this issue is of great concern to me (as it should be), I have found it’s not just drugs on the actual shortage list that I’ve had issues with getting while I’ve been hospitalized for various things over time. It’s been others, too.
This was a difficult alert to read. However, I commend my center for looking into such issues & challenging transplant centers as a whole to do better by their patients.
While this was a liver transplant based study, I am sure livers are not the only organ that are affected by such practices.
I am very pro-research on general principle. The exception lies with “studies” (like this example) which measure only specific short-term endpoints that are inherently hard to measure & quantify.
Things like clinical & economic benefit & those associated “outcomes”.
Everyone has a different definition of “success” in these cases. Also just because it doesn’t show something concrete in dollars & cents or in data points doesn’t mean it doesn’t have value.
A fellow blogger tagged me in a tweet today. I know this was an invitation to read through or comment. I’ve played around with writing about this subject a few times. It always feels a bit too uncomfortable to express openly like this, but I’ll give it a try. It doesn’t bother me to discuss it with others in hard situations & quiet rooms when needed. (I hope this doesn’t come across as rambling. It is long. But to me every word is here for a reason.)
As some of you already know, I’ve been taking very workshops & classes in improv for about 2-3 years now. I enjoy them when I do. I’ve learned a variety of other things rather than just short or long form techniques in that time. It has been an excellent way to lift my spirit & sense of humor in difficult situations. Also to keep my mind active. Above all, it is also fun. Fun is important. Most of us with chronic & rare disease don’t seem to get quite enough of that at points.